MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Saturday, 25 January 2014

A rather good meeting

Prof Kevin Talbot

This afternoon we went to our local MNDA meeting. It was in the Peartree Holiday Inn - and there were a lot of us there. The main meat of the afternoon was feedback from Professor Kevin Talbot, the boss of Oxford's MND Centre about the research going on there. As usual he was very clear for us lay folk about very technical matters. The thing that made me most sit up was the fact that now he is involved with the three largest pharmaceutical companies. As I understand it this is because he feels research has now reached the stage where the drug companies' vast libraries of experimental drugs might usefully be tried on MND-affected stem-cells. Members of his team are now producing sufficient of the latter to try "treating" them, the cells. He told us that, though he believed a cure would be found one day, there was a long way to go yet and it was impossible to predict.

Something else he told us was that the specialist nurse who runs the clinic, Rachel Marsden, and the specialist OT, Jenny Rolfe, the country's expert on wheelchairs for neurological patients, have been appointed to NICE's (National Institute for Health and Care Excellence) advisory panel on MND. I reflected again on how blessed I am to have this Care Centre monitoring my condition.

Jenny Rolfe

Jenny herself reported on the International MND Symposium of last December, which happened in Milan. She concentrated on the care side, such as improving non-invasive ventilation, the evidence of the pros and cons of different direct feeding methods, the devising of an optimum powered wheelchair for people with MND - the Neuro Powered Wheelchair. Judging from my experience there can be no one better than Jenny to know exactly what's needed. One thing she mentioned - which clearly appealed to a lot of others - was the Cuddle Chair, a riser-recliner sofa, designed so that the MND person could have two armrests, essential for standing up, but also can sit with someone, rather than always in isolation. I looked it up on the internet when I got home (Wealden Rehab Kent); ominously there's no price. But it would be nice....

3 comments:

MichaelDo you have any local charities who may wish to help?Here,in the village where we live ,there is an organisation which is a charitable trust ( and has quite large amounts of money) They accept requests for grants for all sorts of things.In the Sheltered Wing where we live there is a gentleman who is an amputee. When Social services told him he could not have an electrically powered wheel chair ( too dangerous!) we applied to the Charity. They paid for him to have a private wheelchair assessment, which he passed with flying colours. Then they provided him with a specially made electric wheelchair for as long as he needs it.They also paid for another person to have a voice operated computer.Is it worth your trying to find out? We didn't know if the Charity I mentioned would help but we applied anyway for the 2 people mentioned, on the principle "God helps those who help themselves!"They have also provided us with a Hostess Trolley and Burco Boiler for the communal kitchen for when there are Social events.